winter sets in early, and fibromyalgia is apparently out of remission

[bertha katzenengel]

Winter seems to have set in early at our house. My other half, my beloved, the love of my life, takes winters very, very hard, and they're getting harder every year. I've sensed for several days that winter has already arrived and today I seem to have got confirmation, when she told me she figures the FM must be out of remission.

I'm posting in the DU Mental Health group because I really don't know where else to go. I feel pretty damned helpless. I can't do anything for her. I'm trying to strong-arm her to the gym tonight,* and she's said "okay, we'll go," but by the end of the day I don't know if she'll be able to. She has serious knee problems and a hip that hampers her mobility by about 50%, so I don't know what good our pool-less gym can even do her.

I don't even know what I'm looking for. At this point commiseration won't do me any good. Today I've read all I can digest about FM and "treatments" for it.

Anyway thanks for reading. Maybe just getting this out there, as a prayer to the cosmos or something, will help.

* because regular exercise helps FM, not as some "cheer-up" depression treatment. i know better.

[Lorien]

1. I've had fibromyalgia for 25 years

It's been under control since I started using this: http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=276&topic_id=1649&mesg_id=1649

and I changed my diet; no processed white sugar or wheat. I'm also cutting back on dairy. I eat mostly organic, non processed foods (avoiding processed foods alone can make a big difference) and never, EVER eat anything with corn syrup of any kind in it! I don't take ANY drugs; I've tried them all, they only make things worse in the end.

If she's having trouble exercising, then I would suggest Grier Childer's Bodyflex system. It sounds to good to be true, but if done correctly, it can really work (get the tapes, not the book).

PM me if you have any questions.

:hi:

[bertha katzenengel]

2. Oh, my.

Lorien, about this Alpha-Stim SCS, your opinion please: we've been talking today about buying a recumbent stationary bike (1. she can ride better than walk for exercise 2. it's easier than dragging to the gym). The one we want is about $360. In your opinion, i.e., if it were you, would you sooner tell your loved one about the Alpha-Stim device and spend an add'l $140 to buy that, rather than getting the bike?

We'd be hard pressed to buy the bike so the other will be a harder sell in financial terms.

I've read your post & will do some research; if I have other questions I'll PM.

And I had no idea, judging from other of your posts, you'd ever had a hard time of it. Amazing how the internet can either reveal or mask things about us. Thanks :hug:

Thanks for all the good info.

[Lorien]

3. It would depend on what my main complaint was

if body aches and pain, plus a sense of "sluggishness" were my primary concern, then the stationary bike (if it were used religiously) might be a good buy-I'd still try the bodyflex exercises first, though (the breathing techniques can make a big difference in helping to raise energy levels). You can also request a free recumbent stationary bike on Freecycle (it's a Yahoo group). Exercise equipment is constantly being dumped there.

If clinical depression, insomnia, and/or anxiety are a primary concern, then I'd opt for the Alpha-stim; but it's best to have a three week trial to test it's effectiveness. Less than 1% feel no effect, but you wouldn't want to spend the money if you were in that tiny percentile. I'm perpetually cash strapped, but I'd sell my home to purchase another Alpha-stim if mine broke and I had no other options. I feel like it's been a life saver for me. They can be found for less on eBay, too-you'll just have to lie about having a prescription to get one.(Unfortunate-since there's no reason for them to be prescription only devices).

I'm self employed because of my fibromyalgia. I'm used to hiding the fact that I have it from my clients since their confidence in my abilities to complete commissions might drop if they were aware of my condition. Now that I have my Alpha-stim, it's even easier to convince others that I'm in the best of health.

Let me know how it goes-

[mopinko]

6. maybe you could get a used bike?

i have had great luck that way, but that is one of the good things about the big city. there is a lot of gently used exercise equipment out there, tho.

[mopinko]

4. hiya bertha, i have been wondering how the 2 of you were doing

i remembered your posts about mrs v's snoring. part of my recent recovery from fibro was realizing the my hubby's snoring/apnea was disturbing my sleep. has mrs v had a sleep study? sleep is an extremely important component of fibro. some people think it is THE important component.
what is mrs doing/taking now? many little things led to better sleep for us both. here's one link-
http://www.stanford.edu/~dement/howto.html
those little nose thingies, raising the head of our bed, darkening windows, and moving my parrot all added up to better sleep. i feel like a new woman. meds helped, but they just did not make it that much better until the sleep was fixed.

[bertha katzenengel]

5. thanks, mo...

Actually I'm the one who snores badly. We sleep in separate rooms. :( You better believe I'll read the info you posted from Stanford. I really, really appreciate it. :hug:

I'll also tell her about sleep & fibro - she doesn't sleep well whether I'm with her or not...

[Lorien]

7. The Alpha-stim also works brilliantly for beating insomnia

a good pair of earplugs helps, too. ;-)

Don't even get me started on prescription sleep aids. Those things can be quite dangerous if used for too long (plus, I found them addictive as hell).

[mopinko]

8. what is she doing for her fibro?

i remember your post when she was finally feeling better. what is she taking/doing for it? what kind of doc does she see? is her exercise being supervised?

lorien's device that she is using sounds very interesting to me. really got me curious. i think i could pass it around the family, here.

[bertha katzenengel]

9. Nothing, Mo.

And she's not exercising. We never did make it to the gym the other night, as I expected. She just didn't feel up to it. We're taking your and others' advice and looking into a "gently used" recumbent bike. I'm also going to print some info about the stim unit and see what she thinks. If she says it's too expensive, I will squirrel funds away privately and buy it for her. Damn it!

[mopinko]

10. exercise can be tough

when i asked my rheumie about getting set up for physical therapy, she said, well, i could, but all i would recommend it 5-10 minutes a day. i had tried so many times to get going with exercise, and i was going by what a "normal" person should do. it was nearly killing me. to say nothing of what it did to me mentally. so, maybe she is just pushing it too hard. short little bits of really, really gentle stretching, especially of the lower back, is what really helped me. just sitting in a chair, pulling one leg at a time up to my lap, and just resting it there without pulling. just breathing through the stiffness, and letting it go.
what is she taking? is she taking a muscle relaxant? pain meds? pain meds caused me so much trouble, but a muscle relaxant at night, and when needed, usually a stressful day, have helped a great deal. it really helps the pain.
i have been taking neurontin, which helped my for a while before, but bombed out, partly by too much pain meds, and partly by second hand sleep troubles. i was taking it 3 times a day, but now i take it just at night. i was taking trazadone for a while, but it was bothering my stomach, and jangling my nerves. the neurontin works great, tho.

[bertha katzenengel]

11. Funny... I take neurontin, prescribed by my psychiatrist along with

my antidepressant. I don't know what his purpose was for it but I'm doing relatively well with both drugs.

I really wish Mrs. V. would get on an FM message board to read things like what you've written. She's not on DU much anymore and I won't direct her to this thread. I'm very co-dependent and she doesn't need a reminder. :shrug:

Do you know of fibro message boards?

I'll suggest the stretching. In fact I'll do it in my chair if we watch TV tonight and see if she'll do it with me.

[mopinko]

12. well, i know that whole drill

try to get my hubby to take care of himself, and if i say it, i can count on him to think it is a bad idea.
i don't know any fibro boards. and i don't remember some of the sites i looked at, but i probably googled fibro and sleep, cuz that is what i was thinking about.
btw, afaik, neurontin is not approved or proven for any psych purpose. it was pushed by merck as a mood stabilizer, but that was part of a lawsuit over pushing off label uses. i am told that it is a very safe med, and will probably not hurt you. it is surely helping my sleep, which helps everything. it is hard to make these decisions, knowing how corrupt that people who are supposed to watch this shit are.

[bertha katzenengel]

13. I should be seeing my shrink soon and intend to ask him "why the

neurontin?" He told me it was an off-label rx and that it was usually used for seizures in much, much larger doses -- which frightens me for the day when I stop taking it.

I'll let you know if my beloved "cooperates." :rofl:

[mopinko]

14. not saying it is not helping

just pointing out what the controversy was. "sheepskins" drive me crazy. just take the pill, and go home, sweetie.
that's why after 9,000,000,000,000 visits to a doctor, it took a nurse here on du to tell me i had fibro.